Saturday, August 26, 2006

Inclusion - Rhetoric and Reality

Advocates of full classroom inclusion for all students believe that simply putting children with serious disabilities in a regular classroom will automatically benefit those children. The inclusion model is based on belief or philosophy. It is not based on evidence, fact or careful study. Regular classroom inclusion does not work for all children. Forcing some children to remain in the regular classroom for the entire school day can legitimately be seen as a form of abuse. There is no question that many autistic children are not receiving a real education.

My autistic son Conor was overwhelmed by being placed in a classroom for a full school day with other students. Like many autistic children he is sensitive to sights and sounds in his environment. He was expected to learn a different curriculum, using a different method of instruction, than other children his same age. The result? Conor was coming home every day with self inflicted bite marks on his hands and wrists. Something had to be done.

Conor was removed from the regular classroom for most of his school day and was permitted to work in a quieter location with a Teachers' Assistant where he recieves one on one instruction. He is brought into the regular classroom for limited, manageable, periods of time for specific defined activities that give him the opportunity to socialize with other students and gives them a chance to socialize with him. Since being removed from the regular classroom the biting has ceased almost completely. He has also been learning more. In his quiet location he can be taught using the specialized Applied Behavioural Analysis methods of instruction which experience and professional study have shown to be effective in teaching autistic children. It would have been abusive to leave Conor in his classroom where he was not learning, where he was frustrated and where his inability to cope resulted in serious self injury.

Homeless advocate and Fredericton Shelter director Pat Carlson described her visits to New Brunswick classrooms and discussions with teachers by suggesting that inclusion, as it is practiced, may be a form of abuse:

"Would you be alarmed to learn that one teacher of the very early years had 18 students, with 11 having behavioural problems?

Medical conditions ranged from Autism, to severe ADHD, to basic behavioural problems. An assistant for half days was all that was allocated. Shame on us for expecting that our children can learn in this environment and that we can offer nothing better than massive groupings with so many needs. In reality is this not a form of abuse?

Daily Gleaner, August 24, 2006, Page B8

http://www.canadaeast.com/dg/opinion/article.php?articleID=36092

Other observers have also suggested that full inclusion may be a form of abuse. Cambridge Universtiy Professor John McBeath was interviewed about a study of inclusion in the UK which he co-authored, Cost of Inclusion, Cambridge University Press, 2006 and stated that:

Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that's not meeting their needs. … You might call it a form of abuse, in a sense, that those children are in a situation that's totally inappropriate for them."

The appropriateness of the full inclusion model for educating autistic children in particular has been questioned by experts in educating autistic children. Mesibov and Shea (Full Inclusion and Students with Autism, Journal of Autism and Developmental Disorders, Vol. 26, No. 3, 1996),reviewed the professional literature and concluded that:

“Although the goals and values underlying full inclusion are laudable, neither the research literature nor thorough analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.”...

Educating students with autism requires an understanding of the unique cognitive, social, sensory, and behavioral deficits that characterize this developmental disability. These include limited and disordered language skills, unusual sensory processing, difficulty combining or integrating ideas, difficulty interpreting the underlying meaning or relationship of events they experience, problems processing multiple sensory stimuli, and resistance to unpredictability and change. Students with autism need special instruction in individually designed settings that minimize their deficits and present information in ways they comprehend. Many traditional educational techniques, appropriate for other students, are particularly ineffective for students with autism. Specifically, students with autism have a fundamental deficit in the area of language, so that verbal explanations of material and expectations are among the least productive ways of conveying information to them. Further, because most students with autism have relatively poor imitation skills, encouraging them to model the behavior of other students is usually ineffective. Finally, many students with autism find social rewards ("I am proud of you," "your buddies will look up to you") incomprehensible or meaningless, making this universally applied education technique of limited value.

While this description of characteristics unique to autism does not mean that students with autism are incapable of learning, it does mean that most of them require specialized instructional techniques. To the extent that regular classrooms cannot adjust to the special needs of many students with autism, the full inclusion model may limit the appropriateness of the education these students would receive under that model. First, full inclusion proposes that the best place for each student is in the regular classroom. Many students with autism, however, perceive their environments differently from children with other handicaps or their nonhandicapped peers. They may find the noise of a regular classroom to be distracting or even painful, the colorful materials distributed throughout the classroom to be overstimulating, and/or the physical organization of the classroom inadequate for identifying where to go and what to do. As a result, these students may have considerable sensory-perceptual difficulties in the classroom, leading to disorganization, agitation and, in some cases, even aggressive outbursts. An important educational strategy for autism is to structure environmental conditions so that students can attend to and comprehend instruction.

These manipulations can include the use of extensive soundproofing, isolated and visually bare work spaces, physical barriers that separate play and work areas, predictable routines, very small groups or individual instruction, and reliance on visual and gestural communication. While these modifications can be made to some extent in regular classes, many teachers may be frustrated by limitations on their ability to adjust their environments to the extent desirable or necessary for their students with autism.

…

A further concern is that full inclusion, as a policy, explicitly and implicitlydiscourages the development of specialized approaches, while the unique characteristics of students with autism make specialization essential. When specialized services are unavailable, students with autism and their families invariably suffer. Frustrated parents can recount a multitude of stories about how otherwise competent professionals misdiagnose their children or suggest inappropriate intervention techniques because they lack expertise in the subtle nuances and variations of autism. Treatment programs have reflected the same problem. While general treatment and educational strategies, such as positive reinforcement, and following a developmental sequence are often applicable to autism, they require specialized knowledge and training to apply appropriately to autistic students. Full inclusion inevitably encourages more generic strategies by placing students, irrespective of their disabilities, with professionals who are required to work with the entire range of students, including nonhandicapped peers. Mesibov and Shea - Full Inclusion and Students with Autism, Journal of Autism and Developmental Disorders, Vol. 26, No. 3, 1996Advocates of full classroom inclusion in New Brunswick would do well to listen to thoughtful and knowledgeable observers of what is really happening in "inclusive" classrooms. Inclusion is a philosophy, a moral principle, which when put in place rigidly, and without regard for its effect on children with autism and other disabilities, can in fact be hurtful and counter productive. Stop preaching about the benefits of inclusion and start looking at the reality.

The reality of full inclusion is not as pretty as the rhetoric. In some cases inclusion is a form of abuse. In many cases it is opportunity lost; the opportunity for autistic children to receive a real education.

3 comments:

It's a viable choice for many NBers, many of whom have special-needs children whom the education system has failed. Often, the parents are more experienced and knowledgeable than supposedly trained staff and professionals.

Parents I have spoken to have found they spend less time and energy and are less stressed now that they teach their kids at home.

And? It's been working well for my family for over 12 years. While none of my kids are autistic, I know they'd all be labelled within an inch of their lives.

I recently read the Dept of Ed's report on inclusion and found Appendix L, page 26 most interesting.

Thanks for your comments about home schooling. For some that is not a choice for various reasons including two parents working. For others it is not a choice but a school decision. But it is good to hear that it is a viable and successful option for some.

There are many interesting points mentioned on L 26. I disagree with the "too many paraprofessionals" ie TA's in the districts.

For many autistic students in the school system it is the TA's who actually assist the students in learning. Instead of cutting back on them it would be far better to train them specific to the disabilities of children they are working with.

We as a society academicaly are unable to compete with China, Japan, etc academicaly and we wonder why? In their culture does full inclusion exist. I think its unfair to the other children who are average and above average to be forced to attend class with children through mainstreaming, inclusion, full inclusion.Should a teacher in 8th grade be forced to deal with a child dumped on her on 1st grade level in the class. No, if the teacher wanted to teach first grade she would be in an elementary school. What about the rights of the regular students? Do they have a right to an education without loud outburst, being hit or grabbed by a student etc. The teacher is trying to tech and this student starts screaming. So, the regular children have lost instruction time. People are fed up with this full inclusion. Many teachers are fed up with these kids being dumped on them and often you can see it when you enter the classroom. they are concerned about the kids who are going to college, trade school and not there to babysit and take kids to restroom.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.